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A bit of a philosophical question (but practical)..
Eric L
Posted: Tuesday, September 10, 2019 11:42 AM
Joined: 12/5/2014
Posts: 1078


My MIL is in the end stages. Hopsice, bed bound, medication to keep her comfortable, etc. She doesn't recognize her kids or grandkids. Her quality of life is very poor at this point in time. She's been able to hold on (but still losing weight she can't afford to lose) via Ensure, yogurt, and a bit of ice cream.

This morning, she coughed each time she after a sip of Ensure. Based on everything the hospice nurse has told me in the last few months, it isn't a good sign. I'm wrestling with trying to figure out what the best course of action is right now.

For those that have gone through this before, which exit is more kind? Is it the starvation or pneumonia? I asked our care aide to hold off on any sort feeding or drinking until the hospice RN visits today and we have more direction.

I told my wife that we are facing an ethical quandary. Do we force food or drink on here to make us feel better (with the prospects of pneumonia lurking) or do we just let her go? I'm gonna be riding solo tonight with MIL because my wife has religious ed with the kids and BIL won't be home. I told my wife that if she is still coughing this evening while they are away, I'm not feeding her.
King Boo
Posted: Tuesday, September 10, 2019 12:38 PM
Joined: 1/9/2012
Posts: 3027


Hi Eric,

I would if the hospice speech pathologist to visit her and comment on how she is handling, or not handling, oral intake.  Perfectly OK on hospice, it's not a therapeutic visit.  My LO got occasional PT assessments for equipment on hospice, for example.  

She may be able to handle a thicker substance like yogurt or pudding vs. something liquid like ensure.  The speech pathologist can possible recommend the use of Thick It for Ensure if it is recommended.

Here is a link for additional perspective on end of life issues, including eating and nutrition, I found it very helpful at my time of need to get my head around this issue.

https://www.alzconnected.org/uploadedFiles/HardChoices.pdf

Food should only be introduced when she is awake, and it should be stopped if she is pocketing it in her cheek.  If she is unable to swallow at all that meal, it should be stopped.

I found it was a stop and go scenario.  Some days, my LO would eat a container of yourt or two at a time - others, nothing.  It tapered down as sleep increased to around the clock, which heralded the end days were approaching.  He could not be roused to eat at which time it was necessary to stop feeding.

So, if she can be roused, and she is stimulable to swallow a bit of yogurt or pudding, try it.  If she is out cold, or is unable to swallow and/or pockets her food, you don't force anything, you let it go for that attempt.  And, as the author of the article mentions, learn to let go of YOUR need for her to eat, because for a body to stop eating when it no longer needs food is the most natural thing in the world as death approaches, hard though it is to see.


zauberflote
Posted: Tuesday, September 10, 2019 12:52 PM
Joined: 10/24/2018
Posts: 362


Eric, this is a hard time isn't it. The coughing may perhaps be (as it might me) from too-well chilled Ensure, or the chocolate if given, or the sugar. This is my personal asthmatic "ticklish bronchi" point of view. When my mom was in the hospital a month ago, and refusing tylenol smushed in some truly nasty pudding, we tried liquid. It is thick, viscous, and evidently has a bite. It would send her into coughing fits. My MIL was a heavy cougher anyway, so coughing at food was a fairly common occurrence for a couple of years as I recall.  Or, as the nurse says, this is not a good sign. 

Have you read Hank Dunn's "Hard Choices for Loving People"? (ETA King Boo beat me to it!) It explains these end of life issues with great clarity, in an easy-to-read manner. It's my (lay person!!!!'s) understanding that once the person begins to reject food, it is because the body can no longer process that food. So it would not be starvation to allow a person not to eat if they can't. Force feeding (which Dunn defines as a feeding tube) can cause distress and simply prolong the hard work of dying. But how does MIL respond to the prospect of eating? If she really wants to eat, maybe it's a matter of trial and error to find a food that will go down more easily. 

You could compromise with yourself and try a simple yogurt first instead of Ensure? If there's coughing and you're not happy with that, and nobody is around, there is always your hospice's "on call" line for after hours. My on call nurses have talked me down from a couple of very high window ledges in the past couple of months. 

I wish you the best in this last times period. Prayer helps. 


harshedbuzz
Posted: Tuesday, September 10, 2019 12:59 PM
Joined: 3/6/2017
Posts: 1638


Eric-

I second what KingBoo suggested about getting a SLP in to do a swallow evaluation and some family training about the safest ways to feed your MIL. 

In addition to thickeners and mechanically processed foods, there are practices you can use to mitigate the risk of aspiration. Making sure she's alert and upright when food is offered, avoiding straws and sports nozzles, prompting her to swallow, checking for pocketed food.

I would not withhold food from someone who willingly eats/drinks but I would also not force it either. My dad died from complications of aspiration pneumonia which presented somewhat atypically; he was in the process of being diagnosed via bloodwork and an X-ray when he passed. I'd seen him hours earlier; he was having an evaluation with an SLP and she used the lunch I'd brought to test him on textures. We had a nice, if somewhat nonsensical, conversation and he flirted with the very attractive SLP about 6 hours before he passed. At that time, he did not seem to be in any kind of physical distress. 

My aunt was at the very end of life when she started to refuse food permanently. Prior to the very end stages, she would go on the occasional "hunger strike" where she might refuse food and liquids for several meals or even days in a row before eating again. 

I hope the hospice RN can offer you some clarity around this.
Eric L
Posted: Tuesday, September 10, 2019 1:43 PM
Joined: 12/5/2014
Posts: 1078


Thank you (so far) for the replies. I'm sort of in one of those weird spots because it isn't my parent. I'm sort of able to see the bigger picture and be a bit more emotionally detached than my wife or her brother is.
TessC
Posted: Tuesday, September 10, 2019 1:46 PM
Joined: 4/1/2014
Posts: 4849


I am in your exact situation now and I have continued to give my mother Ensure -if she is willing to drink it-even if it causes her to cough.  When she coughs, I back off and try again in 5 minutes. She will usually drink more, but if she does not, I don't force. In the past few months, she has gone from drinking 3 Ensures a day and some food, down to 1 and half Ensures and no food-all on her own due to refusal.

  I had hospice's speech therapist come to the house to teach me how to best give my mother liquids. I was told to have her upright as much as is comfortable for her; to have her tilt her head towards me and to thicken very thin liquids (I don't with the Ensure). Even with terrible coughing bouts and some reflux, her lungs remain clear.

 I rather stop feeding her because she got aspiration pneumonia than stop feeding her on my own volition. Getting aspiration pneumonia is out of my hands, but withholding food is in my hands, so that is the choice I made. It is something personal to each family and of course what the patient said in their living wills. My mother only said she did not want tube feeding.

Good luck.


mostlyme
Posted: Saturday, September 14, 2019 11:45 PM
Joined: 12/17/2018
Posts: 222


You've received excellent replies Eric.  I just wanted to add what I learned when researching 'death by starvation' a few years back when it pertained to another LO.  

Apparently it is a very blissful way to die.  No pain.

As zauberflote says, it isn't really starvation per se in this instance.  They body does not want food.  We think of it as such because we imagine how hungry we would be if we hadn't eaten.  But the journey of death is not the same dance as ours.  

Good luck Eric.  And to your wife and MIL as well.  I hope it is a good dance.


Eric L
Posted: Sunday, September 15, 2019 1:45 AM
Joined: 12/5/2014
Posts: 1078


Again, thanks for the replies. I’m still really torn on this issue. It’s hard because the decision isn’t in my hands. I know at this point that I lean towards the ‘less is more’ kind of idea and let things peacefully shutdown. I’m not sure that I could go to the extent of just stopping food, but I’m also in the ‘if she only eats one yogurt today, we have to accept it’ camp. I don’t think it’s right to try and find creative ways to get her to eat more calories at this point. 

I also know that it isn’t my Mom and that when she does pass that my wife and her brother will have lost both parents within the last 5 years and it’s gotta be a hell of thing when you are in your early 40s to lose your parents. It’s my job to support them as best I can.


River Styx
Posted: Sunday, September 15, 2019 6:09 AM
Joined: 1/30/2019
Posts: 34


Hi Eric.  I just had this very discussion with our family doctor last week.  My Mom is on hospice care and has troubling swallowing, communicating, doing everything really . . . she can't get out of bed.  But, we had discussed some of these issues before she got sick.  My Mom has a DNR and living will that makes it a bit easier to make the tough decisions.  She absolutely does not want to be force fed and wants no attempts to save her life.

Even though I know what she would have wanted it is hard to act on her wishes.  The doctor reminded me of who Mom is and what she wanted.  She explained what it means in very practical terms.  It means that I don't force feed and if she gets pneumonia we provide comfort care vs. trying to save her to lay in bed another day.  What would your LO have wanted when she was still able to make these decisions for herself/himself?  Let their wishes guide you.


 
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